As we announced recently in Café ICA, the Association of Reproductive Health Professionals (ARHP) and the ICA have launched a joint educational program entitled Screening, Treatment, and Management of IC/PBS (Interstitial Cystitis/Painful Bladder Syndrome).

Live Webinar events are now scheduled as part of this educational series. The Webinars have been developed for healthcare providers (physicians, nurse practitioners, physician assistants, nurse midwives, pharmacists, and other professionals) and patients to help better recognize and treat IC/PBS.

Please plan to attend these interactive web sessions and get immediate answers to your questions. All you need is a standard browser and computer audio (speakers, headphones, etc.) to take advantage of real-time educational sessions with expert speakers.

The first of these webinars took place on December 12 and featured Lee Shulman, MD, as the IC presenter.

NEXT SCHEDULED WEBINAR:

January 15, 2008
Time: 9 PM EST
Presenter: Robert Moldwin, MD

Please click here to register.

2. Voices in the IC Community

2.1 Medical Students Receive Educational Training from IC Advocate

Risa Cohen, right, and AMSA Conference Chair, Andrew Ray.

At the recent American Medical Student Association (AMSA) Regional Conference in Portland, Maine, from November 9 through 11, IC patient and nurse, Risa Cohen, RN, presented a breakout session entitled Diagnosis and Treatment of Interstitial Cystitis. The weekend conference, People Treating People, targeting both medical and pre-medical students, was hosted by The University of New England College of Osteopathic Medicine. According to Ms. Cohen, this was the very first time that an AMSA event was hosted by an osteopathy program and the first time that IC was on the agenda.

"I was honored to represent both fellow patients and medical caregivers on behalf of the ICA at this informative presentation. The large audience of future physicians from medical schools such as Brown and the University of Pennsylvania asked many pertinent questions. With a time limit of one hour, I chose to concentrate heavily on diagnosis, treatment options, and prevalence of IC. I was pleased to note that many instructors are now including IC as a separate entity in their lectures concerning fibromyalgia, auto immune disorders and irritable bowel syndrome," Risa reported.

The conference program described Risa as "a registered nurse who has been directly involved with health and human services for thirty years. She has worked in the field of women's health at the Florence Crittenton House in Brighton, Massachusetts, and more recently as a healthcare coordinator and educator to agencies who support people with disabilities in residential programs. Three years ago, Risa herself was diagnosed with interstitial cystitis and has been involved in the support of others with this confusing diagnosis ever since."

The ICA supplied Risa with a copy of the ICA Healthcare Professional Power Point presentation and a number of printed materials to hand out. "I was thrilled to represent the ICA and cannot thank you enough for all the valuable information I was able to share," said Risa. "I truly enjoy educating others in any way possible about IC and am a very comfortable public speaker. I can be available to you at any time!"

2.2 The Journal of Urology Appoints Steers as New Editor

William D. Steers, MD

Our congratulations to William D. Steers, MD, who was recently named editor of The Journal of Urology, the official journal of the American Urological Association (AUA) and the most widely read and cited journal in the field of urology. Dr. Steers replaces former editor Martin I. Resnick, MD, who died earlier this year. Dr. Steers was appointed by the AUA and assumed editorship of The Journal of Urology, which is published by Elsevier, on November 1, 2007.

Dr. Steers is the Hovey Dabney Professor of Urology and chair of the Department of Urology at the University of Virginia Health System in Charlottesville, and a Trustee on the American Board of Urology.

3. News YOU Can Use!

3.1 ICA METRIC Survey Results Debut at APHA Poster Presentation

The initial results of a multi-year IC research collaboration between the ICA and the National Organization for Research at the University of Chicago (NORC) were presented during a poster session at the American Public Health Association's (APHA) 135th Annual Meeting and Exposition held November 3rd through the 7th at the Washington, DC Convention Center.

The APHA Annual Meeting and Exposition is the oldest and largest gathering of public health professionals in the world, attracting more than 13,000 national and international physicians, administrators, nurses, educators, researchers, epidemiologists, and related health specialists.

The poster, Living with Interstitial Cystitis: Early Results from the METRIC Survey, represents the first public presentation of findings from the ICA's Measurements and Evaluation of Trends Relevant to IC (METRIC) epidemiology survey, a study funded by the ICA's own Pilot Research Program.

The ICA and NORC developed a 28-page survey to gather tangible information on IC-related life experiences. 7,700 surveys were mailed randomly to ICA members and people who requested information from the ICA. This mailing yielded a response rate of 37 percent.

Not surprisingly, survey respondents reported that IC significantly impacts their personal lives.

Preliminary findings of this groundbreaking study include:

40.4 percent of respondents reported that their self esteem has suffered as a result of IC.

42.2 percent reported that IC has caused them to "miss out on life."

31.0 percent reported that IC has led them to have suicidal thoughts.

22.0 percent reported that IC has caused them to lose close, meaningful relationships.

The study also conveys that one of the major impacts of IC among respondents is on sexual relations. IC has caused negative impacts on sharing intimacy (65.8 percent), greater pain during sexual activity (71.0 percent), decreased sexual desire (65.0 percent), decrease in sexual activity (74.2 percent), and abstinence from sexual activity altogether (24.5 percent). Despite these strong impacts, only 20.6 percent of respondents reported that their healthcare provider had offered advice or treatments to help with IC-related sexual concerns.

The ICA is continuing its collaboration with NORC on a series of scientific papers that are based on the now complete survey results. Our hope is to have one or more of the METRIC study papers published in relevant medical and scientific journals.

Our thanks to all of you who took the time to participate in this very important research survey and to those whose contributions to the ICA's research program helped to make this study possible.

3.2 DEA Rules on Schedule II Multiple Prescriptions

On November 19, 2007, the US Drug Enforcement Administration (DEA) released its final rule that will allow doctors to give patients multiple prescriptions of Schedule II narcotics for up to a 90-day supply. Current laws do not permit more than a 30-day supply, forcing pain patient to make doctor visits monthly and forcing medical practices to perform much more paper work.

The DEA received nearly 300 comments after the rule was first proposed, with the majority approving of the change. Under the new rule, which went into effect on December 19, prescribers can give patients multiple dated prescriptions for the same Schedule II drug that when combined do not add up to more than a 90-day supply. Pharmacists will not be able to fill any of the prescriptions before the dates on the prescriptions.

To read an article from Medical News Today about this new rule that includes the position of the American Academy of Pain Medicine, please click here.

To read the entire Department of Justice / DEA Final Rule 2007, please click here.

3.3 IC Holiday Help to the Rescue!

The holiday season is in full swing! This is a time for celebration, family and friends, reflection on the passing year's events, and bringing in the New Year. But keep in mind that there is good stress and bad stress, and that even good stress can take its toll on your IC and related conditions. So, while enjoying the exhilaration of the holidays, please be sure to try to maintain a regular schedule (as much as possible). As most of us have experienced, changes in eating, sleeping, drinking, etc., can cause flares in chronic illness(es).

Here are some "words of wisdom" that you may find helpful while navigating your way through the holiday maze:

1. If you feel that a particular event presents too many potential challenges for you, then consider not going. Ask yourself if the event/occasion is that important to you in the long run. And try not to have a guilt trip about not going. Guilt has a tendency to only make matters worse.

2. If you decide to attend a holiday event, but you don't know about the menu, try calling ahead to explain your particular circumstances or, when you arrive at the event, ask for sauces on the side if possible. At buffets this can work because you can choose not to use the sauces; when attending a sit-down dinner, you can ask the waiter to have the chef prepare your foods with the sauces on the side.

3. In a panic about going out to holiday shop in your town? Then consider online shopping this year and make sure that you use iGive.com or Goodsearch.com as your portal if possible. www.igive.com and www.goodsearch.com donate part of their proceeds to nonprofit organizations, including the ICA.

4. Take extra time for yourself, even if others in your life seem to have schedules full of activities. Try your hand at being low-key and calm. Relax, meditate, enjoy the simple life, reflect --do whatever it takes to help YOU be of the moment and not worrying about what you should and shouldn't be doing for the holidays.

5. Make sure that all of your needed prescriptions are filled prior to the onset of the hectic times of the holiday season, before stores are swamped with long lines and no parking spaces.

6. Take your special self-care items with you should you have to attend a party or event, or should you be traveling long distance for the holidays (i.e. favorite comfy pillow, hot or cold pack, bottled water, etc.).

7. Don't try to do everything yourself. If you need help, ask for it. Help can come from the most unexpected sources-- you only need to ask.

8. Don't try to accomplish all of your holiday errands in one day. People with IC and related conditions tend to try to accomplish everything that they can on a good day (when they are feeling relatively fine), only to crash the next day. Instead, try to pace yourself.

9. Don't over-extend or obligate yourself to anyone or any particular event. Be kind to yourself!

10. AND, MOST IMPORTANTLY: Don't beat yourself up or try to live up to anyone's expectations of what you should be doing for the holidays. You are your own person. Don't put pressure on yourself by trying to live up to the idea of the holidays as portrayed by the media.

3.4 ICA Call to Action!

The National Institutes of Health Patient-Reported Outcomes Measurement Information System (PROMIS) project is developing new patient-reported measures of pain, fatigue, and other health outcomes to help understand the impact of different health conditions and treatments on people's everyday lives. PROMIS is currently collecting information on how pain affects your day to day life.

If you have chronic pain (daily pain for the past 3 months or longer), you may be eligible to participate! It is an easy click process. Your responses are confidential and will help PROMIS make sure that these questions are relevant for people with chronic pain.

To learn more and begin the survey, please click here.

A New Look for the ICA Update! Subscribe Now!   The first-ever full-color ICA Update magazine was published in late September. Now the second edition is at press! The new full color ICA Update will continue to bring ICA members their favorite features, such as the Doctor's Forum column, feature articles about people living with IC, the latest IC research news, and helpful tips and coping strategies. We also plan to expand our coverage to include articles on topics that members of the ICA have told us that they are interested in reading. This new look is also designed with our readers in mind. Research has shown that the use of colorful graphics, color photos, and interesting design helps the reader to recall information presented and increases readability. The ICA publishes the ICA Update four times a year as a nonprofit service to all those who contribute $45.00 or more per year. If you would like to start receiving the new, full-color ICA Update, please click here to become an ICA member today.

 From the ICA Mailroom:

Dear ICA,

To all of you, I give thanks. I know how hard each and every one of you work. You have given me information and hope when there seemed to be none! For this I thank you, a thousand-plus times! Please use this small donation where it is needed most. So glad to be a member of ICA. - Kaye L. K.

4. The Latest IC Research Highlights

Vulvodynia Rate in IC Could Be Twice as High as Thought
Peters K, Girdler B, Carrico D, Ibrahim I, Diokno A. Painful bladder syndrome/interstitial cystitis and vulvodynia: a clinical correlation. Int Urogynecol J Pelvic Floor Dysfunct. 2007 Nov 24 [Epub ahead of print]

Past studies, mainly surveys, pegged the rate of vulvodynia in IC/painful bladder syndrome (PBS) patients at 25%. But these clinicians found the rate to be double that in their own IC/PBS patients. Vulvodynia doesn't have a strict definition, so they used their own-patients reporting an average pain of over 1 on a 10-point scale to touch at a number of sites in the vulvar area. They found that 51 percent of their patients had vulvodynia and 49 percent did not. Those who did have vulvodynia also had greater pain in a pelvic floor muscle called the levator. The rate of vulvodynia in IC/PBS patients may have been underestimated, the investigators said, and they called for research to explore the link between precipitating factors, symptoms, and effective treatment options for IC/PBS and vulvodynia.

Surgery Is Only for Patients with Hunner's Ulcers
Rössberger J, Fall M, Jonsson O, Peeker R. Long-term results of reconstructive surgery in patients with bladder pain syndrome/interstitial cystitis: subtyping is imperative. Urology. 2007 Oct;70(4):638-42.

Surgery is only for IC patients with Hunner's ulcers, according to these Swedish urologists. They studied the records of 47 IC patients who underwent some kind of bladder surgery over 25 years. Patients had various types of surgery, from bladder augmentation to removal. For 28 of 34 patients with Hunner's ulcers, the surgery resolved symptoms completely. Of the remaining six, four had success with additional surgery. In contrast, only 3 of 13 patients who did not have Hunner's ulcers had their symptoms resolve after surgery, and two of those needed additional surgery. Bladder surgery should be a last-resort treatment only for patients with end-stage Hunner's disease, the urologists emphasized.

Combination Oral and Instilled Elmiron Improves Relief
Davis EL, El Khoudary SR, Talbott EO, Davis J, Regan LJ. Safety and Efficacy of the Use of Intravesical and Oral Pentosan Polysulfate Sodium for Interstitial Cystitis: A Randomized Double-Blind Clinical Trial. J Urol. 2007 Nov 12 [Epub ahead of print]

Over the course of 18 weeks in this study, 41 IC patients took oral pentosan polysulfate sodium (Elmiron). One group (21) got Elmiron in instillations, and another group got a placebo instillation in addition to oral Elmiron. Researchers checked patients' progress at 6, 12, and 18 weeks using the O'Leary-Sant Interstitial Cystitis Symptom and Problem Indexes and other questionnaires and voiding diaries. Improvement in symptom and problem scores after 12 weeks was about 46 percent in the patients who got the Elmiron instillation, versus about 24 percent for those who got the placebo instillation. At 18 weeks, the group that got the Elmiron instillation also had much better scores on a quality of life questionnaire than the placebo group.

Hydrodistention, Suplatast Tosilate are Top Treatment Picks in Japan
Ito T, Ueda T, Honma Y, Takei M. Recent trends in patient characteristics and therapeutic choices for interstitial cystitis: Analysis of 282 Japanese patients. Int J Urol. 2007 Dec;14(12):1068-70.

Tokyo urologists analyzed the Japanese IC database to characterize patients and see how they were being treated. The ratio of women to men was about 6 to 1, with about 30 percent of patients in their 60s. It took an average of 3 years (with a range of 1 month to 10 years) for patients to get a diagnosis. A history of pelvic surgery was the most common finding in patients' medical history, followed by urinary tract infection. Nearly all (98 percent) of the patients had frequency, 62 percent had urgency, 42 percent had suprapubic pain, about half had glomerulations, and about 7 percent had ulcers. The most widely carried out therapy was hydrodistention (68 percent of cases), followed by oral suplatast tosilate (66 percent), antihistamines (26 percent), and DMSO instillation (23 percent). Suplatast tosilate is an asthma and allergy therapy marketed in Japan that is being tested for IC.

Longer Stimulation Test Phase Gets Safety Nod
Kessler TM, Burkhard FC, Madersbacher H, Kofler A, Poewe W, Kiss G. Safety of prolonged sacral neuromodulation tined lead testing. Curr Med Res Opin. 2007 Dec 10 [Epub ahead of print]

If you decide to try sacral neuromodulation, you go through a test phase where the leads for the stimulator are implanted, but the pulse generator is not. Normally, that period has been four to seven days, but clinical researchers have found that longer testing is a much more reliable way to tell if stimulation is going to work for you. But does that longer test phase mean more chances for problems, such as infection? No, said these European urologists, who tracked the complications during prolonged testing of tined leads in 44 patients, 18 of whom had chronic pelvic pain. The test phase was a minimum of 14 days and averaged 30 days. During the test phase, 2 patients (5 percent) had complications, and after implantation, 5 of the 31 patients who got the implanted pulse generator had problems, but those problems couldn't be attributed to prolonged testing. None of the patients had infections. Prolonged testing, said the investigators, should become standard, although they called for larger, randomized, controlled studies.

Anti-inflammatory-Chitosan Combination Shows Potential as Instillation
Jordan JL, Henderson S, Elson CM, Zhou J, Kydonieus A, Downie J, Lee TD. Use of a sulfated chitosan derivative to reduce bladder inflammation in the rat. Urology. 2007 Nov;70(5):1014-8.

These Canadian researchers tested a new type of instillation combination in experimental animals. The cocktail combined an anti-inflammatory agent with a carrier that is a natural polymer derived from chitosan, a chemical substance derived from the shells of crustaceans. The anti-inflammatory agent was 5-ASA or mesalamine (Canasa), which is used in inflammatory bowel disease. The investigators tested the combination against plain saline solution in rats with irritated bladders. The animals' frequency went down, and the inflammation seen in bladder tissue under the microscope went down by up to 75 percent. The investigators noted that this reduction in inflammation is significantly higher than that reported with Cystistat.

Review Finds Positive Results for Physical Therapy
Montenegro ML, Vasconcelos EC, Candido Dos Reis FJ, Nogueira AA, Poli-Neto OB. Physical therapy in the management of women with chronic pelvic pain. Int J Clin Pract. 2007 Dec 7 [Epub ahead of print]

These gynecologists combed the literature for medical studies and medical opinion about musculoskeletal disorders and physical therapy in chronic pelvic pain (which can include IC). The reviewers put special emphasis on prospective trials of physical therapy that were larger and used validated measurements. The evidence so far indicates that most women with chronic pelvic pain do have musculoskeletal disorders, which might cause the pelvic pain or might be a result of it. Physical therapy is becoming more necessary for both a more refined diagnosis and for getting effective and lasting results, the gynecologists concluded.

Pelvic Floor Is More Sensitive in Women with Pelvic Pain
Tu FF, Fitzgerald CM, Kuiken T, Farrell T, Norman HR. Comparative Measurement of Pelvic Floor Pain Sensitivity in Chronic Pelvic Pain. Obstet Gynecol. 2007 Dec;110(6):1244-1248.

Women with pelvic pain conditions were tested for pain sensitivity of the pelvic floor and vagina, and their responses were compared with those of healthy women. Sensitivity was measured with a device that exerts varying degrees of pressure to check the pain threshold to pressure. The 14 women with pelvic pain had significantly lower thresholds for feeling pain from pressure in the vagina and pelvic floor than did the healthy women.

Doc Urges Colleagues to Communicate Better with You
Cheong Y, Stones RW. Doctors and the chronic pelvic pain patient. Minerva Ginecol. 2007 Dec;59(6):613-8.

When no cause for pelvic pain can be found, the doctor's attitude can have a significant effect on how well the patient does. For that reason, doctors should be aware of their own underlying attitudes and how those might affect working with pelvic pain patients, said this UK doctor. He noted that some patients may want to have open, nondirective consultations, whereas some prefer doctors to be more direct. Identify your patient's expectations, and then try to meet them, he recommended.

Hot-button IC Issues Debated with Research Set on Simmer
Hanno PM. Re-imagining Interstitial Cystitis. Urol Clin North Am. 2008 Feb;35(1):91-9.

There haven't been any dramatic breakthroughs in IC since antiproliferative factor (APF) was discovered, although potentially exciting research is going on in epidemiology, etiology, and clinical treatment. During this "hiatus," many clinicians and researchers are taking another look at what exactly is being studied and how the syndrome should be approached. The article discusses some of the current "hot-button" issues about the definition and name of IC.

New Approach is Successful for Pelvic Pain Nerve Block
Schultz DM. Inferior hypogastric plexus blockade: a transsacral approach. Pain Physician. 2007 Nov;10(6):757-63.

Nerves from a bundle of nerves called the hypogastric plexus go to the lower pelvic organs and genitals, and nerve blocks at that plexus can be helpful for pelvic pain, but injecting along the vertebrae or across the disks isn't always successful. These pain specialists got success performing the block through the openings in the sacral bone. The researchers reported on doing inferior hypogastric plexus blocks this way in 11 women with chronic pelvic pain. The technique took pain down from an average 7.4 to 5, and there were no complications. The authors called transsacral blockade of this nerve bundle a safe technique for treating as well as for diagnosing chronic pain in pelvic organs.

Gabapentin Reduces Catheter-related Bladder Discomfort
Agarwal A, Dhiraaj S, Pawar S, Kapoor R, Gupta D, Singh PK. An evaluation of the efficacy of gabapentin for prevention of catheter-related bladder discomfort: a prospective, randomized, placebo-controlled, double-blind study. Anesth Analg. 2007 Nov;105(5):1454-7, table of contents.

Although this study was of patients who had catheters placed after having bladder stones removed, the results give some indication of how gabapentin (Neurontin) may be useful for IC as well. Having the catheter in place often causes bladder discomfort. One group of 54 patients (both sexes) got 600 mg of gabapentin one hour before surgery and the other group of 54 got a placebo. Of those who got Neurontin, only 50 percent reported bladder discomfort, whereas 80 percent of the patients who got the placebo did. The gabapentin patients also needed less or no opioid painkillers after surgery.

Company Keeps Working on Experimental Asthma/IC Drug
MN 001: KCA 757, KCA-757, MN-001. Drugs R D. 2007;8(6):400-2.

This article describes the progress so far made by Medici Nova in developing the drug MN 001, which they licensed from Kyorin Pharmaceutical in Japan (where the drug was known as KCA 757). At the doses tested in the IC trial, the drug did not show benefit over placebo. In an asthma trial, patients with mild to moderate asthma did have results of their breathing tests improve. Another asthma trial is still in progress. The company has stopped developing an immediate-release form of the drug and is still developing an extended-release formulation.

Osteopathy, Integrative Medicine Useful for Pelvic Pain
Tettambel MA. Using integrative therapies to treat women with chronic pelvic pain. J Am Osteopath Assoc. 2007 Nov;107(10 Suppl 6):ES17-20.

In this article, an osteopathic doctor advises her colleagues to consider integrative therapy that addresses the body-mind-spirit continuum when they treat women with pelvic pain. She believes osteopathic manipulative treatment is a valuable option for many women affected by pelvic pain from childbirth to menopause.

Instillation Outperforms Oral Therapy in Czech Study
Zámecník L, Hanus T, Pavlík I. Painful bladder syndrome in interstitial cystitis: relation between symptoms, endoscopy and biopsia results and the treatment effects. [Article in Czech] Cas Lek Cesk. 2007;146(10):801-5.

These Czech urologists compared the effectiveness of various IC therapies in 30 IC patients. The only therapy that produced statistically significant improvements in scores on the O'Leary-Sant Symptom and Problem Indexes was instillation with heparin, which was better than oral medication. The researchers also found that scores correlated with the numbers of mast cells found in bladder tissue.

IL-6 Doesn't Pan Out as IC Marker in Instillation Study
Daha LK, Lazar D, Simak R, Pflüger H. Is there a relation between urinary interleukin-6 levels and symptoms before and after intra-vesical glycosaminoglycan substitution therapy in patients with bladder pain syndrome/interstitial cystitis? Int Urogynecol J Pelvic Floor Dysfunct. 2007 Dec;18(12):1449-52. Epub 2007 Mar 20.

Because interleukin-6 (IL-6) was proposed as a potential marker of inflammation in IC, these investigators looked at levels in 25 IC/PBS patients before and after twice-weekly treatment with Elmiron instillations. All the patients were treated for five weeks, and responders were treated for another five weeks. Nonresponders got hyaluronic acid treatment. Before treatment, the investigators could measure IL-6 in only nine patients, and afterwards in only two. Patients' pain and symptom and problem scores went down with treatment, but there was no difference in scores between those who had Il-6 in their urine beforehand and those who did not. IL-6 is not a good marker for diagnosis or for predicting the response to treatment, said the researchers.

Endometriosis May Affect Bladder
Akhter N, Sohail I, Shah S, Farouk K, Sultana N. Vesical endometriosis. J Coll Physicians Surg Pak. 2007 Nov;17(11):702-3.

This case report of endometriosis affecting the bladder, which is rare, shows that the symptoms are similar to IC but yet distinct. The woman in Pakistan had urgency, frequency, and lower abdominal pain, but she also had blood in the urine that increased during menstruation. Biopsy of the growth in the bladder showed it was endometriosis. She was treated with a drug similar to danazol (Danocrine).

Men with BPH Have Glomerulations, Too
Furuya R, Masumori N, Furuya S, Oda T, Takahashi S, Takeuchi M. Glomerulation observed during transurethral resection of the prostate for patients with lower urinary tract symptoms suggestive of benign prostatic hyperplasia is a common finding but no predictor of clinical outcome. Urology. 2007 Nov;70(5):922-6.

Although bladder glomerulations (pinpoint bleeding) are common in IC, men with symptoms of benign prostatic hyperplasia (BPH) sometimes have them, too. These researchers did cystoscopy with hydrodistention on 197 men who were undergoing surgical reduction of the prostate for BPH. The urologists then assessed the men's symptoms and urine flow three months and one year after the surgery. About 20 percent (40) of the men had glomerulations. Bladder capacity did not differ between the men who had glomerulations and those who didn't, although those who did have them tended to be younger, had lighter prostates, and had more symptoms to begin with based on an IC symptom and problem questionnaire. At three months and one year, however, there were no differences in symptoms between the two groups. In men with BPH, glomerulations don't predict the outcome of treatment, concluded the investigators.

ICA Resources

NEW! Because You Care: Being Your Own Best Advocate

Living with IC and related conditions can be a challenge. This new booklet in our Because you Care series is designed to help people with IC meet the challenges of chronic illness and find validation, comfort, and relief. We have found that it is very helpful for people with IC to become actively involved in the management of their condition and to be strong advocates for themselves. After all, no one knows as well as you do what it is like to BE you!

Topics covered include medication issues, employment issues, educational issues, insurance issues, disability issues, and three chapters focusing on navigating daily challenges in your own life.

CLICK HERE TO ORDER NOW!

https://secure3.realssl.com/ichelp/store/shop.cgi?page=Topic04.html#BKBYCA07

The Many Faces of IC—People Living with Interstitial Cystitis: Their Stories

The ICA has brought together a collection of some of our most popular and inspiring patient stories that we have had the privilege of publishing over the past several years.

This book contains 100-plus pages of inspirational and moving profiles of people living with IC. The Many Faces of IC includes portraits of men, women, and children from a multitude of cultural, ethnic, and philosophical backgrounds.

CLICK HERE TO ORDER NOW!

https://secure3.realssl.com/ichelp/store/shop.cgi?page=Topic10.html#BKMF06

Because You Care: Exploring the Unique Intimacy Issues of People with Interstitial Cystitis

Another first for the IC world from the ICA— a booklet about sexual intimacy issues and challenges written from the patient's perspective!

This one-of-a-kind booklet is written especially for people with IC and their intimate partners, offering insight into how IC affects sexuality, as well as successful coping strategies for achieving and maintaining rewarding intimate relationships while living with IC.

The 45-page Because You Care booklet focuses on the following challenges of sexual intimacy and IC: physical, psychological, emotional, social, spiritual, cultural, and other special concerns, such as medications and the concerns of men who suffer from IC.

CLICK HERE TO ORDER NOW!

https://secure3.realssl.com/ichelp/store/shop.cgi?page=Topic04.html#BKBYCI06

IC: Current Concepts—Part Two of the ICA's Video Series

This video presentation was recorded at the ICA's University of Maryland Regional IC Forum that took place at the Hyatt Regency in Arlington, VA, in September 2005. The keynote speaker was 2003 National Book Award winner, Carlos Eire, PhD, a Yale University professor who is an IC sufferer. Featured presenters included clinicians and researchers from the University of Maryland: Toby Chai, MD; Susan Keay, MD, PhD; and John Warren, MD. ICA Founder and President, Vicki Ratner, MD, moderated the event.

The most current IC research is explained by the researchers themselves. IC: Current Concepts is designed for both IC patients and healthcare providers. The presentation is available in both DVD and VHS formats.

CLICK HERE TO ORDER NOW!

https://secure3.realssl.com/ichelp/store/shop.cgi?page=Topic09.html#UM05

ALSO AVAILABLE: For those of you who prefer reading IC presentations, we have published a written transcript of IC: Current Concepts.

CLICK HERE TO ORDER NOW!

https://secure3.realssl.com/ichelp/store/shop.cgi?page=Topic01.html#TRUM05

Our Pocket Guide Series Continues!

IC: Expert Opinions, Volume II

With IC: Expert Opinions, Volume II, we have assembled some of the top experts in the field of IC to explore specific topics and special concerns that people with IC often ask about. This is the fourth addition to our Pocket Guide series. Physicians included in Expert Opinions, Volume II: Robert Evans, MD; Christopher Payne, MD; Susan Keay, MD; John Warren, MD; and Kristene Whitmore, MD.

CLICK HERE TO ORDER NOW!

https://secure3.realssl.com/ichelp/store/shop.cgi?page=Topic01.html#XOP205

5. Upcoming Conferences

6. Products That Can Help YOU Today!

CystoProtek®: CystoProtek®, a patent-protected natural oral dietary supplement in softgel capsule form, has been clinically demonstrated to relieve symptoms associated with interstitial cystitis. The anti-inflammatory properties of the chondroitin sulfate, quercetin and rutin in CystoProtek®’s unique natural formula reduce bladder damage and pain, while its glucosamine sulfate, chondroitin sulfate and hyaluronate sodium help replenish the damaged glycosaminoglycan (GAG) protective layer in the bladder.

CystoProtek®’s beneficial effects in interstitial cystitis are believed to be due to this dual action. In two clinical studies, CystoProtek® was well tolerated by patients and reported to be effective in reducing the pain and improving overall symptoms in many women with interstitial cystitis. To find out more about CystoProtek® please visit http://www.cysto-protek.com/ or call 888-317-0001.

Desert Harvest Aloe Vera: Aloe vera is a powerful anti-inflammatory and pain reliever. A small clinical trial of Desert Harvest whole-leaf aloe vera capsules showed significant reduction in the symptoms of IC. Desert Harvest Aloe Vera’s active ingredient is a polysaccharide, which researchers believe may form an artificial GAG layer in the bladder.

Desert Harvest makes this very concentrated form of aloe vera just for IC patients. They remove the two chemicals in the aloe plant that cause diarrhea, and all of the water and fiber, leaving all of the other ingredients of the plant intact. Desert Harvest dries their aloe without heat. Heat can damage the active ingredients, and adds no fillers or preservatives.

For more information and a free sample, please visit http://www.desertharvest.com/ or call 1-800-222-3901.

LoFric Catheters: Astra Tech, Inc. is the maker of the LoFric hydrophilic catheters and kits for intermittent catheterization. LoFric is the only catheter in the world proven to reduce the risk of both UTIs and long-term complications. 100% latex-free. To find out more please visit http://www.lofric.com/.

Prelief: AkPharma, Inc. makes Prelief, a dietary supplement containing calcium glycerophosphate that has been shown in research studies on IC patients to help reduce bladder pain and urinary urgency when used with acidic foods and beverages.

For more information about Prelief, please visit http://www.prelief.com/ or call (800) 994-4711.

To find out more please visit http://www.minutemaid.com/.

Natural Touch Kaffree Roma: Roma is a multi-grain beverage with chicory that has a full-bodied taste similar to coffee, but without caffeine or tannic acids. It can be used as a coffee or hot cocoa substitute. Roma is distributed by Worthington Foods, a division of Kellogg's, and can be found in many major supermarkets.

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